| Update |
| It has been an extremely long time since I've updated this site, my apologies. A lot has happened since I last posted information: I started college and have a new diagnosis. I started attending Northwestern University last fall with high hopes of being able to handle a full class load. However, I was disappointed to realize that I am not able to be a typical student. At one point I was ready to quit and take long distance learning classes-thankfully, my parents convinced me to go another quarter and see how I felt about it. I did decide to continue to attend NU, but over my spring break my mom took me to Mayo Clinic to see if there was anything they could tell me about my situation that we didn't already know. My time at Mayo ultimately proved to be beneficial despite how I was initially treated (I was told in no uncertain terms that I was not sick and that even if I did have a heart condition, it wouldn't cause me to feel bad-I cried and my mom got mad). After we made it clear that I was not coming in search of a miracle cure, the doctors finally listened to me-beware, I found that having the diagnosis of CFS was what prejudiced the doctors against me. You can't give up trying to get through to doctors, we didn't give up and it turned out well. I was told that I have Inappropriate Sinus Tachycardia (a revision to my previous diagnosis of supraventricular tachycardia) with POTS (Postural Orthostatic Tachycardia Syndrome-a low blood pressure condition). To find a definition and more detailed explanation of what those mean for me, click on the links. The doctors told me that they often see this condition in young women who have suffered a severe viral infection (like me) or severe chest or back trauma and that it "spontaneously remits" (uh, young women includes up to age 35, sorry don't really want to sit around waiting 15 more years for this to remit, not trying anything). I was prescribed to an interval training exercise regimen (previously I had been opposed to this form of treatment, but I was willing to try anything) to help get my heart in better shape and hopefully correct the condition so I could go off my heart medicine (I'm now on 1/3 of what I had been) and support hose for POTS to keep blood from pooling in my legs, therefore raising my blood pressure. Because I wanted to get started on this immediately, I decided to take a medical leave from the last quarter of school (NU was very understanding and supportive). I began interval training (exercise but not nearly as much as I had been getting at school-which was killing me) and a medically based weight loss program (I had gained a lot of weight from inactivity and wanted to lose it for myself but also prove to the doctors that it is NOT a reason why I'm sick). The break from school has done me well, I am so grateful that I decided to take time off to try and get better. Since I started the weight loss program, I have lost over 60 lbs (yay!), I feel so much better about myself, and I have been told that it definitely shows in the way I act. The interval training hasn't killed me, but it took a lot out of me, and was really all the energy I had. I have tried to stay more active than before I was when I started school, so that I would be at least more used to activity when I start school again. I am not sure that I am feeling physically better, but I am feeling mentally and emotionally better. I have been able to go off 2/3 of my heart medicine, which is a great improvement-hopefully I will be able to go off of it completely sometime this next year. I am also off Doxepin, which helped me sleep-HOWEVER I still have difficulty falling asleep and have opted for a natural alternative, which does help. I feel like I am in the elimination stage: I'm working on taking the heart condition out of the picture as well as the weight issue. Once those are taken care of, I can move on to the next problem-maybe eliminating problems one by one if the best way to do it, I don't know. I don't know if I'll ever feel "normal" again, but I have to continue to try to get better while moving on with my life. I will not let this stop me. Check out the above links for info on my new diagnosis, the information on Dr. Lerner (whom I would still recommend), who diagnosed me with a heart condition and treated me before Mayo, click here. HOME |